the International Perthes Study Group’s
A D U L T P E R T H E S S U R V E Y
Calling all adults who were diagnosed with Perthes disease in their childhood! We need your help for Perthes research! If your age is 18 years or over, we would like to learn about your past and current experience with Perthes.
The Perthes Kids Foundation and Legg Calvé Perthes Foundation are happy to announce our support of research efforts by the International Perthes Study Group (IPSG). We invite you to participate in a survey of adults who had Perthes disease as children to learn how you are doing now.
Why is the Adult Perthes Survey so important? There are several reasons…
1. Currently we have very limited information on how adults with Perthes are doing.
2. Once patients turn 18, pediatric orthopedic surgeons no longer see their patients with Perthes and lose touch with how their patients are doing as adults.
3. Most of long-term studies on Perthes are restricted to less than 100 patients and do not provide a good overview of how adults with Perthes are functioning in terms of their daily activities, work, and sports.
4. Doctors have very limited information about how many adult patients with Perthes require a total hip replacement and at what age and how patients are functioning after the hip replacement.
5. The information gathered from this survey will help doctors better educate parents and children who are affected with Perthes on long-term expectations and outcomes.
6. The information gathered from the survey will also help doctors with future research.
“Our goal is to gather information from over 1000 adults with Perthes! This will be a great achievement for the Perthes community and for our understanding of how Perthes is affecting adults. Please spread the word about this survey so that anyone who had Perthes as a child can contribute to this important study.” - IPSG
“We are more than happy to help distribute and promote this very important survey for Perthes research. We are hoping our entire global Perthes network will help aid in this project. For adults to have the opportunity to share their medical information and stories, could prove beneficial in one day finding a cure for this disease.” - PKF
Joined At The Hip: Episode 3
This particular episode of our popular facebook live series, Joined At The Hip, with Dr. Harry Kim (International Perthes Study Group), Earl Cole (Perthes Kids Foundation) & Dr. Joel Wells (UT Southwestern Medical Center), talked in depth about The Effects of Perthes into Adulthood, hip replacements, and the importance of the Adult Perthes Survey. Check it out!
For more information about IPSG and the Adult Perthes Survey, please visit perthesdisease.org. Help us gather over one thousand adults to participate in this special project.